One day Anni was twirling and singing one of her original compositions.
"It's my gift!" she declared.
Dizzy, she fell with spectacular gracelessness.
Laying on her back on the tile floor she began flapping her arms and legs
as if she were making a snow angel.
"Falling down is also a gift!" says she.

Monday, May 24, 2004

Annika is tube-free! Hooray! Chicago gave the OK for her PICC line to be pulled today, and our kind nurse from home health care came right over to take it out. Annika was so excited, she gave the nurse a big smile and said, "Thank you!" So she can have her first bath since early January. Finally, and just in time as she has been getting herself really dirty outside lately. Her labs are still off (by quite a bit), but they have decided to give her a bit of a break and wait two weeks before redrawing her labs. It is still worrisome that her labs are still so bad (showing that her liver is still being injured). They have added yet another med to her routine, bringing her up to 11 pills 4 times a day, in an attempt to improve her liver functioning. However, she is feeling pretty good most of the time. And just extremely happy to be free of the constraints of the PICC. Last weekend, Joerg brought home a little gift for her--a new little pony to add to her playhouse stable. We have been working on manners with her, so after she opened it, he asked her, "What do you say when someone gives you a gift?" She widened her big, blue eyes and replied enthusiastically, "Holy Smokes!" I have planted a lot of new flowers in the yard this Spring. In order to save them from Anni's attentive ministrations, we have designated the purple petunias that her grandpa got her as "Anni's flowers." They are the ones that she takes care of, while I take care of all the rest of them. She has drowned those flowers, watering them repeatedly as often as she can. She has "fed" them with sand from her sandbox. She has given them I.V.'s and N.G. tubes (the tubes that go in your nose down to your stomach). She presents most of the blossoms to me before going inside. But those silly flowers look perfectly happy! So I guess gardening and preschoolers really do go together... Anni is so disappointed that she can't pick up Frankie, and she tries pretty frequently (although that's not allowed). It's shocking to realize that Frankie doesn't weigh that much less than Annika at this point. Frankie seems to enjoy her sister's attentions even more now. Frequently, I'm about to tell Anni to leave Frankie alone when she's grabbing her arms to "dance" or using her hands to pucker up Frankie's face into a fish mouth or something that would seem to be similarly annoying, but then I look at Frankie and see that she's grinning. So they are still getting on spectacularly. Annika's been working with me to get Frankie to speak. Frankie's favorite syllable lately is, "Wah." So she will babble "wahwahwahwah!" and then look to us for a response. Anni will always "wahwahwahwah" right back to her, much to her sister's delight. Frankie's now the proud owner of 3 teeth, and she's been trying to pull herself up. Anni's looking forward to Frankie going mobile. Well, actually she already is mobile. I put her down on the floor and go to get a drink and, magically, 10 seconds later she is in a completely different part of the room. However, she does it all with only a combination of roll and scoot. Anyway, we are crossing our fingers that we can stay out of the hospital now that Anni will need an I.V. placed if she's readmitted. No more hospital!!!

Friday, May 14, 2004

Today I am having one of those "Gee, time flies and I am really getting old" kind of days. It all started because we just got a new computer with DSL. I am loving the radio feature, which allows me to listen in to all the cool internet stations. Quite frankly, all the radio stations here in town are just awful and I have really missed hearing new music since I'm not really getting out all too much anymore. So again I have the chance to explore genres as I did in my younger days. However, I have discovered that I have not heard of lots and lots of the artists. Sigh. I used to have at least passing acquaintance with music across a really broad spectrum. The next thing I did was go to the iTunes store to check out what was available, not that I was actually going to buy something (remember that we just bought the computer I am currently pounding away on). One very fun feature was the collection of iMixes--mix CDs created by users of the site. Reading through them (and there are just tons of them), it struck me that creating a mix CD has just become de rigueur among the mostly college-aged users. Oy! I still remember when CDs were an exotic luxury. I remember vividly the sense of splurging I got when I bought myself a CD player for my sophomore year of college. As recently as my first year of graduate school, I was still giving and getting mix tapes. OK, so none of this is all that profound, but I guess that this is the first major shift in technology that I feel that I am behind, rather than following along with it--growing up with it, as it were. Of course, a large part of this is just now being a parent. It really does make your perception of time completely different. One of Joerg's colleagues has 2 sons, the oldest of which was just graduating high school when we moved here. He is now entering his second year of graduate school. The idea that 5 years has passed just like that is astounding. The years that I spent in college felt like such a long time, like an entire epoch in my life. I entered one person, and emerged a completely different creature. That progression lent those years weight. These years since moving here, while incredibly eventful and life-changing, have seen more subtle changes in me. I feel like the time is passing too quickly when everyday I wake up and I swear I can see my girls changing from day to day, while I seem to be only becoming more and more mommy-like. No dramatic changes for me at this point, I guess. Thus time is speeding past me, while I realize that I am now becoming spectator to those still blissfully unaware of its passage. OK, so enough of the navel-gazing. You'd think I'd have gotten enough of that in my teen years. So I guess I'm not too terribly old just yet... More things to make me feel old: Annika, at 3 1/2, is already showing signs of the teenager to come. She adores chatting on the phone with her Grandma and Grandpa Bond, especially as my mom will patiently "talk" with her for quite a long time. Today when I offered her the phone to talk to Grandma, she said, "Thank you, Mama." And then she headed upstairs. When I followed her up the stairs to her room, she took the phone away from her ear long enough to tell me, "Go back down stairs!" and shut the door emphatically behind me. And so it begins... Today we went to the mall. We were actually planning on going to the Childrens' Discovery Museum here in town, but when I pulled up I saw that there were three huge buses in the parking lot and the museum was packed with kids, so decided that might not be the best place to bring my immunosuppressed toddler. It was raining, so the park didn't seem a good option. That left the mall, which has a merry-go-round that she loves and does give her a good chance to walk around and get some exercise. Lately, her favorite store has been Old Navy. She loves going in there and poking around. I finally figured out that the attraction is that they always have really fun, upbeat music played at pretty high levels. Today in her explorations she picked out a jelly clutch handbag that I have to admit matched her outfit perfectly. She also found herself a pair of very sparkly flip-flops, which she promptly put on her feet. Then she found a mirror and stood in front of it dancing. She yelled, "Come on, Mom! Dance with me! These are my dancing shoes!" And so help me, I danced with her. I can only say again, Oy! Then, in Sears, she found a gigantic pink suitcase filled with makeup that she really insisted upon having. I explained to her that she was too young for makeup, but every time I turned my back, she snuck one of those darn makeup suitcases into the bottom of the stroller (they had the things everywhere throughout the store--what were they thinking??!) So we managed to get out without the giant makeup collection, but as soon as we got home she began her non-stop campaign to have some makeup. In the end I went and got her some lipstick, eyeshadow, and blush and let her go wild in front of a mirror. Once again, Oy! Annika's imagination has also been a source of great amusement lately. She makes up stories non-stop during the day. Today, she came to me dragging her play cash register along behind her. "Look, Mommy! It's my brand new plastic, pet doggy! Do you want to pet it?" Sure, I said. "OK, now it's time to feed him. We feed him credit cards." And she got out her play credit card and swiped it along the cash register. So today was a day of phones, insistence on privacy, makeup, accessorizing, and credit cards for Anni. No wonder I'm feeling old. I have a 3-year-old teenager. Frankie, meanwhile, has decided to show me up completely in the abdominal fitness arena. For some reason, this child has always done these mini-crunches whenever you lay her down on her back. She's done them since she was just a few weeks old. Well, today I discovered that she finally has enough abdominal strength to come to a sitting position from her back using only her own belly (not pulling up with her arms). Of course, I discovered this while I was in the midst of changing a gigantic hugely poopy diaper. So there I was trying to get the poop cleaned off her legs, where it had exploded, when suddenly she was sitting up reaching for the pooped-up wipes. Quite disconcerting, and more than a bit messy... OK, old women need their sleep so off to bed...

Wednesday, May 12, 2004

We are back home. Actually, we've been home for a few days, but have been busy trying desperately to catch up again. Joerg's preparing for a class he's teaching at Indiana University next month, and I had big plans for our poor neglected landscape this Spring. Oh, well. So here's what happened: We went to clinic, and Anni spiked a very high fever. So we were admitted, much to our surprise as Anni had given no sign of coming down with something. Her fever finally came down that night, but they decided to do a liver biopsy, as it didn't really look like she had a simple viral infection and rejection can cause fever. Amazingly, they scheduled it for 9 a.m. and actually stuck to the schedule, which meant that we had the results back by that afternoon. The biopsy still showed signs of rejection, but Dr. Emerick said that her liver actually looked much better than her lab numbers would have suggested. They decided to hit her with another round of high-dose IV steroids to try to finally get rid of the smoldering rejection. As you may remember from my updates during Anni's last round of mega-steroids, it is not much fun for her (or her parents, either). The steroids make it very difficult for her to sleep, give her nightmares, and generally send her into wild mood-swings, and most of the moods are not very pretty. Again, though, with both of us there with her she did pretty well. The next day, they decided to do another CT to check on the status of her lymph nodes. This has been Anni's least favorite procedure because she has always had to get an NG-tube (the tube that goes into her nose down to her stomach) to get the contrast solution needed for a good picture. She just always stubbornly refused to drink the stuff. This time, she finally "got it" that if she would only drink it, even though she didn't like the taste, that she wouldn't have to get the tube. Hooray for finally developing the reasoning that allows her to choose the lesser of two evils! So she drank it all up, not without protest, of course, but she got it down. She was a little nervous about going downstairs to the CT suite, and kept announcing to all she passed that she was NOT going to get a tube down her nose. In the end it all went well. The CT results were that there has been absolutely no change again. I think that the docs are beginning to think that maybe those silly lymph nodes are just going to be there, just hanging out in her abdomen. I'm not sure how closely we're going to have to monitor them. They put Anni on pretty powerful IV antibiotics the very first night she was in the hospital. She had another fever the next morning, but after the third round of antibiotics, the fever went away, not to return for the rest of our hospital stay. We continued the antibiotics for 48 hours, and did 3 days of the steroids. After the last round of steroids, we headed home. Of course, the very next morning, Anni woke up with another high fever. Again, she didn't have a runny nose or diarrhea, or any other symptoms of being sick. Unexplained fevers really really freak me out. Especially when they come back soon after stopping antibiotics. If you remember, Anni had super bad terrible problems with many many bacterial infections before her first transplant. So anytime a high fever shows up without the usual accompanying symptoms, I get very nervous. We called her docs in Chicago, but they decided to send her for labs before having her come back to Chicago. We took her to our local hospital, and had the blood drawn. We were only home a few hours when the docs in Chicago called back to tell us that her potassium was critically low (very low levels of potassium can cause heart problems). So she had to head into the ER to get a 4-hour infusion of IV potassium. No more fevers, and after she got the potassium she felt much better. She seems to be back to normal now, although she has moments of true grouchiness (being on mega-steroids is hard, but I've been told that you feel absolutely awful when you come off them, too). Frankie was none too happy about going to the hospital, interrupting her little routine that she's intent on developing. She expressed her displeasure by refusing to nurse, which was pretty uncomfortable for me, not to mention worrying me that something was wrong with her. However, as soon as we got back home, she was back to her usual voracious self. And she celebrated the return to her crib by sleeping through the night for the first time ever! That only lasted for one night, though... Frankie has added to her repertoire of communicative skills. She now growls. A really really loud growl. She's turning into a pretty noisy baby, actually. I remember that my niece, Darcy, also growled quite a bit as a baby. However, it was pretty funny on Darcy because she had this really loud, menacing growl sound going on, but she was such a tiny, delicate, cute little baby. It's funny on Frankie, too, but in a baby that ate Manhattan kind of way. She is just so darn big. Frankie has also discovered paper with a vengeance. We really have to watch closely that she doesn't snag some as she always always always tries to eat it. She now reaches for anything and everything within sight, and she has really good aim. I'm amazed at how easily she gets things. Her big sister also loved paper. My parents gave me a subscription to Newsweek around the time that Anni was born, and I remember joking with them about what a good present it was, as I read the magazine during my long, sleepless newborn nights to keep me awake while nursing. Then, as Anni got older, she enjoyed tearing the pages out of the magazine just as fast as I could read them. Rather than eating the pages, though, Anni liked to crumple them into little balls, which she let fall all over the floor. This, in turn, provided hours of entertainment for the cats. So the magazine was fun for all members of the household. Family recycling. Well, this is already too long, so I'll call it quits. Just wanted to let you all know that we're back home... Friday, May 7, 2004 Just a quick note to let you know that we are back in Chicago. We have no idea what is up. We came in for clinic on Thursday morning, expecting to be back home that night. Anni had other ideas, though, as she spiked a gigantic fever just as the doctor came in to examine her. So we were admitted, and they did a biopsy this morning (her labs continued to worsen this week). She has no signs of illness, though, so the fevers (she had another during the night) are completely a mystery. We'll let you all know what they find out. It could be an infection in her PICC line (her semi-permanent IV)... We should know something by tomorrow at least. OK, Frankie's upset, so I need to go. Enjoy your weekend!